Gender dimension of TB: Voices from the field

Shobha Shukla, Citizen News Service - CNSTB is the third leading cause of death for women worldwide, with women accounting for 3.3 million (37%) of the total of 9.0 million incident cases and over half a million TB deaths in 2013. Even though the TB bacteria does not distinguish between the sexes while targeting its prey, TB impacts women differently due to a host of social, cultural and economic factors, affecting them severely --whether they themselves are TB patients or are care givers of some TB patient in the family.
As part of the CNS team, I spoke to several women caregivers, patients and healthcare professionals of TB about this burning issue. Here are some excerpts:

“My elder daughter is admitted for MDR-TB treatment. My house is in a mess, as I have to stay with her in the hospital day and night. I have another 12 years old daughter who has to look after the house in my absence and therefore has stopped going to school, as there is no one else to do the family chores. I cannot expect my school going son to discontinue his education. This is how things are” (mother of a 17 years old female MDR-TB patient)

“There is still a lot of stigma attached with TB in case of girls and women. They are generally dependent on others to take them to the hospital for diagnosis and treatment, which often delays care. Their families often desert them. It is generally seen that if a woman is having TB then her parents, and not her in-laws or husband, look her after her” (Sayantani Ghosh, counsellor at MDR-TB care facility in West Bengal)

“Women are more generally compliant with treatment adherence as compared to men. But women patients have to face greater stigma. They do not get family and emotional support. Their nutritional needs are also overlooked. They are often dependent on others to bring them to the hospital for diagnosis and for follow up tests or if there are adverse reactions to look into. These delays can prove to be very crucial. Very often they do not tell about adverse drug reactions like depression or psychological disturbances. All this makes them more vulnerable to the ravages of TB” (Dr Neeta Singla, PMDT Nodal Officer at LRS Institute of TB and Respiratory Diseases, Delhi)

“Genital TB, which mostly impacts women of age group 15-35 years, is a major cause of tubal infertility. In India, 19% infertility in women (which is a is a big socio-cultural issue) can be attributed to genital TB. TB in pregnant women increases risk of adverse pregnancy outcomes. Pregnant women with TB have double risk for low birth weight, double risk for premature birth, five times for perinatal death, ten times higher risk for foetal death as compared to pregnant women without TB”. (Dr Nerges Mistry of The Foundation for Medical Research and Mamta Jacob of Global Health Advocates India)

According to Dr Paula Fujiwara, Scientific Director at the International Union Against Tuberculosis and Lung Disease (the Union), “TB needs to be taken seriously as a women's health issue because women and girls with TB suffer unique and often oppressive challenges. Women diagnosed with TB are often abandoned by their families, ostracized by their communities, fired from their jobs, deemed unworthy of marriage and motherhood. In some countries where TB is common, traditional gender dynamics prevent women from going to the clinic on their own to seek treatment and care, leaving the disease to advance into critical stages. They have a more challenging time accessing TB services than men do, typically”.

So very true!

Some more heart-rending real life stories--
19 years old Reena, whom I met at the MDR-TB drug-dispensing counter of Rajan Babu TB hospital in New Delhi, looked at me blankly as I inquired about her health. The doctor told me that even though she was in the continuation phase of her MDR-TB medication, her hearing power had been impaired irreversibly due to side effect of medicines, as she had not told about this problem in the initial stages. So I communicated through pen and paper and Reena responded verbally—“I had earlier been cured of drug sensitive TB in 2007. But 3 years later, I was sent to look after my elder married sister who was suffering from TB (the sister died eventually). I contracted the disease again from her—this time a deadlier form of it—MDR-TB. Life became a nightmare after this. I had to discontinue my studies. I could not even walk properly; I almost turned bald. My two married sisters died of TB, but I want to live and lead a normal TB free life and go back to my studies once I am okay.”

I met 18 years old Rinki, a slum dweller, in the Model MDR-TB Ward 8 of LRS Institute, Delhi, where she had been admitted for breathlessness. Rinki was married off at the very young age of 14 years even as she was just recuperating after completing a 6 months TB treatment. After marriage her TB recurred, but her in-laws did not pay much attention to her problem and her 10 months long treatment was disrupted many times. She eventually developed MDR-TB and was thrown out of her in-laws house. They did not want a sick daughter-in-law in the household who was a financial liability. Her poor parents somehow managed to complete her MDR-TB treatment. However TB had taken its toll by damaging her lungs, so she needs an oxygen cylinder to breathe, which her poor parents can ill afford. She is in and out of the hospital and always in a state of stress for being a financial burden on her already poor family.

A 28 years old transgender living with HIV as well as with MDR-TB recalled the discrimination she faced in her community because of her disease. Her own people would look down upon her and shun her like an untouchable. They would all stay away from her. She could not go and visit her village and other places. She stayed indoors and could not go out for work also.(Excerpt from CNS interview with transgender person at an MSF clinic in Mumbai)

The WHO rightly recognizes that: Empowering women will be critical to reach the goal of ending the TB epidemic. More women in affected communities and women’s advocates need to be engaged in efforts to design and enhance access to TB services for women. TB prevention, diagnosis and treatment should form core components of health interventions for women, particularly along their reproductive life cycle.

“As we celebrate women’s empowerment on this International Women’s Day”, said Dr Mario Raviglione, Director of WHO’s Global TB Programme, “All of us working to end TB must commit to do much more to engage women in affected communities and, through them, enable equitable access to care. More than half a million women dying of TB each year, largely because of poor access and discrimination, is something outrageous that we must correct urgently"

Shobha Shukla, Citizen News Service - CNS 10 March 2015(The author is the Managing Editor of Citizen News Service - CNS. She is a J2J Fellow of National Press Foundation (NPF) USA and received her editing training in Singapore. She has earlier worked with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored and edited publications on gender justice, childhood TB, childhood pneumonia, Hepatitis C Virus and HIV, and MDR-TB. Email: shobha@citizen-news.org, website: www.citizen-news.org)